Australian Human Rights Commission

Short document title, Short description – Date


Australian Human Rights Commission

Human rights approach to ageing and health: Respect and choice – 2012

Table of Contents

Executive Summary 1

1 Introduction 3

1.1 Access to care and support for older Australians 4

1.2 Government action to reform Australia’s aged care system 5

1.3 Why Australia requires a human rights approach to care and support 6

International legal and policy frameworks 6

National legal and policy frameworks 7

2 A human rights based approach and the aged care reforms 9

2.1 Added value 9

2.2 Non-discrimination 10

2.3 Availability, accessibility, acceptability and quality 10

Availability 10

Accessibility 10

Acceptability 11

Quality 11

2.4 General and immediate obligations 11

2.5 Progressive realisation 12

2.6 Participation 13

2.7 Monitoring and accountability 13

3 The Aged Care Reforms and human rights 14

3.1 Consumer directed care 14

3.2 Advance care planning 15

3.3 Supported decision-making 15

3.4 Health literacy 18

3.5 Acceptability of services 19

Aboriginal and Torres Strait Islander peoples 19

Culturally and Linguistically Diverse older people 20

Older Veterans 21

Lesbian, gay, bisexual, transgender and intersex people 21

Women 22

Other special needs groups 23

3.6 Quality of services 23

3.7 Access to services 25

3.8 Accountability and the Aged Care Sector 26

4 Health Workers – an essential building block 30

5 Conclusion 31

Appendix A – A human rights approach guideline questionnaire 33

i


Australian Human Rights Commission

Human rights approach to ageing and health: Respect and choice – 2012

Executive Summary

Australia is experiencing a demographic shift with life expectancy 25 years longer than it was a century ago. We are seeing an increase in the size of the older population in Australia as a result. This lengthened life expectancy is to be celebrated. But it comes with challenges, with a substantial impact on Australia’s health system and the aged care sector.

In April 2012, the federal government released its aged care reform agenda. This was in response to the Productivity Commission’s inquiry into aged care services in Australia. This position paper outlines a human rights approach for the implementation of the aged care reforms.

A human rights approach is the implementation of a set of essential principles that provides a baseline for human rights protection. It is an approach that can result in improvements in service delivery standards. The approach can provide a framework to guide decision-making, encourage the collection of disaggregated data to inform policy decisions and promote age sensitive programmes.

The approach adopted in this paper reflects that developed by the United Nations Committee on Economic Social and Cultural Rights in General Comment No. 14 ‘The right of everyone to the enjoyment of the highest attainable standard of physical and mental health’.[i]

By adopting a human rights approach we are able to better understand how health services can be delivered in a manner that is non-discriminatory and promotes equality; ensures that services are available, accessible, appropriate and of good quality; and have adequate monitoring mechanisms and ensure government accountability.

The paper briefly discusses these elements and then applies them to selected components of the aged care reforms. The selected components include consumer directed care, advance care planning, special needs groups, accessible services and human rights training for health workers.

The aged care reform package can be strengthened by incorporating a human rights approach to the delivery of services for older Australians. The aim would be to promote people-centred decision-making and real change in organisational culture. The specific areas of the reform package that can easily accommodate a human rights approach include:

· The incorporation of indicators to monitor the implementation of consumer directed care. These indicators will be essential to determine the accessibility and quality of these services and to ensure the rights of older recipients of these services are protected and their decisions respected.

· The implementation of advance care training programs that extend beyond general practitioners to include health workers in the acute care sector and in the aged care sector. This would facilitate a process of effective communication between the acute care sector and the aged care sector and promote respect for the end-of-life decisions of older Australians.

· The development of a national program for improvement of health literacy to promote the participation of older Australians in consumer directed care.

· The development of disaggregated indicators, at least on the grounds of sex, race, ethnicity, sexuality, socio-economic status, place of abode and urban/rural/remote location. These indicators will provide detailed information on the human rights issues of availability, accessibility and acceptability of aged care services to the whole of the older Australian population as well as to the special needs groups.

· Improvement of the effectiveness of the Broadband for Seniors Initiative to ensure that older Australians are confident internet users and can effectively engage with the Telehealth program.

· The development of indicators related to the charters of rights contained in the User Principles 1997 (Cth). These indicators should be included in the set of national quality indicators that will monitor the quality of aged care services.

· Human rights training for health workers to ensure they are culturally competent, respect difference and diversity in the older Australian population and understand and respect human rights.

We are at the very beginning of the implementation of the aged care reforms. It is a time that offers us a significant opportunity. One that can ensure the human rights of all older Australians in receipt of aged care services are protected and their choices respected.

2


Australian Human Rights Commission

Human rights approach to ageing and health: Respect and choice – 2012

1 Introduction

Australia, like many countries, is experiencing a demographic shift. Australians are living 25 years longer than they did a century ago.[ii] The number of Australians aged 85 and over is projected to increase from 0.4 million in 2010 to 1.8 million by 2050.[iii] In 2007 people aged 65 years and over made up 13 per cent of Australia’s population. This proportion is projected to increase to between 23 per cent and 25 per cent in 2056.[iv] This will have a substantial impact on Australia’s health system generally and the aged care home based, flexible and residential care system specifically.

The aged care sector has recognised for some time that Australia’s aged care health system would be unable to respond appropriately to the changing demographic and that reform to the system was required. To that end, in 2010 the federal government requested the Productivity Commission to conduct a comprehensive inquiry into aged care and to provide a set of recommendations for reform of the system. The Productivity Commission released its report in August 2011 and following national consultations the federal government released the aged care reform package Living Longer. Living Better. in April 2012. The reforms are to be implemented over a period of 10 years with a review of implementation in 5 years.

The provision of quality aged care and support in the appropriate environment is a fundamental human right.[v] This paper proposes a human rights approach as the lens through which implementation of the federal government’s aged care reform package can be monitored and reviewed.

A human rights approach is the application of a set of essential principles to policies and programs that provides a baseline for human rights protection.[vi] The approach is a systematic way of integrating the norms, principles, standards and goals of national and international human rights law into all decision making processes, law and policy development and project implementation. It requires that the content and process of all our actions are informed by human rights principles such as participation, accountability, equality and empowerment.

Central to human rights is the protection of the most vulnerable. For those who have had a lifetime of disadvantage, their ability to claim their rights can be severely compromised. A human rights approach will assist to enable these older members of our society to claim their rights. Annexure A provides an example of a set of questions that would be asked if a human rights approach was to be implemented.

The aged care sector has long been concerned with equitable access to services and participation. However, the sector policy tends to speak in terms of priorities and goals rather than in terms of rights.[vii] The application of a human rights approach will assure a strengthened focus on a people-centred approach to aged care and the requirement for meaningful participation by older Australians. The approach will assist with ensuring that older recipients of home and residential care can help to set their own agenda and have their decisions respected.

The requirement for accountability is not new to the health sector. Financial accountability (tracking and reporting on allocation, disbursement and utilisation of funds) and performance accountability (demonstrating and accounting for performance in the light of agreed indicators) are well known. Although human rights accountability is also concerned with these two categories, its focus is the degree to which the government is complying with human rights obligations.

When the human rights approach is properly applied to the provision of health programs to older people it can help to transform the design and delivery of services. As noted by the United Kingdom Joint Committee on Human Rights,

It is an approach that promotes ‘people-centred’ decision-making, and at the same time provides guidance on how to balance competing rights in the presence of restricted resources; it can promote real change in organisational culture and improve the quality of service provision.[viii]

1.1 Access to care and support for older Australians

The increase in life expectancy is a cause for celebration. As the World Health Organisation has said ‘Population ageing is one of humanity’s greatest triumphs’.[ix]

While older Australians are living longer and healthier lives, it is inevitable that as we get older we will be increasingly likely to require health service provision of some sort, be it support to ensure access to social activities, assistance with daily living, assistance with medications, monitoring for illness, or more intensive assistance such as that provided in a residential care facility.[x]

The increase in the number of older Australians will result in an increased demand for aged care services. The increased demand will require increased federal government and private spending on aged care.[xi]

Funding for aged care services principally comes from the Australian government. State and Territory governments and individuals receiving care also contribute.[xii] Overall federal government expenditure for ageing and aged care during 2010–11 totalled $11.024 billion.[xiii] This amount included aged care support and assistance provided both under and outside the Aged Care Act 1997 (Cth) (the Aged Care Act). The largest amount of expenditure outside the Aged Care Act was $1.291 billion for the Home and Community Care program.[xiv]

The Intergenerational Report 2010 recorded that Australian government aged care services spending was estimated to be 0.8 per cent of GDP in 2009–10 increasing to 1.1 per cent when State and Territory government and individual contributions are included.[xv]

As the population ages, more people will fall into the older age groups that are the

most frequent users of the public health system. From 2009–10 to 2049–50 Australian Government spending on aged care is expected to rise from 0.8 per cent of GDP to 1.8 per cent,[xvi] and real health spending on those aged over 65 years is expected to increase around seven-fold.[xvii] Over the same period, real health spending on those over 85 years is expected to increase around twelve-fold.[xviii]

Although many of us will require some sort of assistance as we grow older, this does not mean that all of us will spend our last years in a residential aged care facility. Research shows that while 15 per cent of those 80 years and over live in care accommodation, only one per cent of people aged 60 to 79 years does so.[xix] Early last year a Galaxy Poll found that more than 90 per cent of Australians want to stay in their own homes, even after the negative effects of ageing begin to set in.[xx] These data confirm the reality of older people’s lives but are contrary to media portrayal.

One of the most common reasons for entering residential aged care is dementia.[xxi] The Australian Institute of Health and Welfare found that in 2008–09, 53 per cent of the permanent residents living in Australian Government subsidised aged care facilities had been diagnosed with dementia and approximately 79 per cent of all residents with dementia were aged 80 years or older.[xxii] At the same time over 60 per cent of people with dementia live in the community, with many of them receiving no support from funded programs.[xxiii]

In 2011, there was an estimated 266,574 people with dementia in Australia.[xxiv] The Australian population is projected to increase by 40 per cent in the next 40 years and the prevalence of dementia, in the absence of a medical breakthrough, is predicted to grow by up to 300 per cent with approximately 730,000 Australians estimated to have dementia by 2050.[xxv]

1.2 Government action to reform Australia’s aged care system

In August 2011, the federal government and the State/Territory governments finalised the new National Health Reform Agreement.[xxvi] From 1 July 2012, the Commonwealth Government assumed funding and program responsibility for people aged 65 years and older in the general population, and for Aboriginal and Torres Strait Islander Peoples who are aged 50 years and older (excluding Western Australia and Victoria).

In view of the ageing of Australia’s population, the projected increase in demand for aged care services and the then planned national health reforms, in 2010 the federal government requested the Productivity Commission to conduct a public inquiry into aged care. The Productivity Commission was asked to develop detailed options for the redesign of Australia’s aged care system.[xxvii]

The Productivity Commission found that Australia’s aged care system had strengths but also many weaknesses. Older people and their carers found the system to be difficult to navigate, provided limited choice and services, and services that were of variable quality.[xxviii] The final report, tabled in Parliament in August 2011, proposed a detailed reform package to address the weaknesses in the system. The report encompassed the issues of access to services, availability and quality of services, health care workforce and funding.

On 20 April 2012, the federal government released the Living Longer. Living Better. aged care reform package, which provides $3.7 billion over five years.[xxix] The package represents the commencement of a 10 year reform program to create a flexible and seamless system that provides older Australians with more choice, control and easier access to a full range of services, where they want them and when they need them.[xxx] The federal government’s aged care reform package has been widely welcomed although with some qualifications.